31 August 2011

"Thursday 15 September, 2011 is R U OK?Day. It’s a national
day of action which aims to prevent suicide by encouraging
Australians to connect with someone they care about and help stop
little problems turning into big ones.

On that day we want everyone across the country, from all
backgrounds and walks of life, to ask family, friends and colleagues:
"Are you OK?".

Staying connected with others is crucial to our general health
and wellbeing. Feeling isolated or hopeless can contribute to
depression and other mental illnesses, which can ultimately result in
suicide. Regular, meaningful conversations can protect those we know
and love.It's so simple. In the time it takes to have a coffee, you can
start a conversation that could change a life."

A blogger friend of mine, Lori, has a mantra: Speak. It might save
someone's life.

I saw a post
and video
on Lori's blog about R U OK?Day
and thought of what she's been through. She's my age, with two young
children, and lost her husband earlier this year to suicide. Lori has
shared her story of her husband's suicide and the impact on her
family, often in confronting detail, on her blog. The destruction is
incomprehensible. It was Lori's story about suicide that made me
realise the importance of reaching out to someone in need.

A couple of months ago, someone I am very close to began to go
through a tough time. Maybe began is the wrong word –
everything came to a head for him, I guess. He sought treatment for
addiction and depression. I think I was one of the few he told. And I
didn't realise how bad things had become for him until I asked how he
was. The bad things he told me, and the good, have sometimes been
really hard to take. It was especially hard hearing he wanted to die.

I kept listening to him, reassuring him I'd listen without
judgment. I kept the conversation going, asking him if he is ok. He
told me not to worry. Of course I worried. And I often felt helpless.
I just wished he could feel worthy.

He is on medication now, and seems to be doing ok. But it will be
a long road. He said he wouldn't have gotten through he hard times
without the support he received from those close to him.

I still continue to ask how he is, every day. Because it's so
important to reach out to someone in need and listen to them. While
unlike Lori's situation, he isn't my husband, not even my boyfriend,
I cant imagine loving someone else like I love him, and I can't
imagine losing him to self destruction or suicide. If I lost him I
would regret it if I did not reach out.

'Addiction', 'depression' and 'suicide' can be such dirty words,
there is such a stigma - but that the cost of not reaching out when
you know someone is in trouble could be catastrophic. You don't have
to know what to say, just listen without judgment. People need to
know they're worthy and loved, that someone is there to listen to
them, and that someone is willing to ask whether they're ok.

PS: if you are providing support to someone in need, I strongly
recommend talking to someone - a trusted friend, a counsellor or one
of the services listed below - to ensure you are supported
too.

25 August 2011

I spent some more time in hospital this week. Not on the ward, just in emergency and the dermatology clinic yesterday and today.

The pain in my skin, particularly on my legs, was too sore to bear earlier in the week. The pain pounded from the inside out, it hurt to take each step. It hurt to sleep under the blankets. Taking off my stockings left long, bloody cuts on my legs.

It hurts and I wish it would stop.Thanks to my wonderful Mum and her friend for driving from Albury to take me to hospital yesterday. And thanks for making
me laugh. And buying an impressive meal from the cafeteria :) Love you both ♥ Now I have to rest with my legs bandaged and elevated. In front of the TV (hello Rush!).

Here are my legs that I bandaged last night. The attractiveness is jealousy inducing, I know.

I hate the unpredictability of it all. Why can’t my skin condition come with a
fun sort of spontaneity? Like last minute road trips or a picnic or free
tickets to the concert you thought had sold out?

23 August 2011

This week marks one year since I began
to love him. I remember my realisation – it was after a text from
him, telling me he is glad he started talking to me, it feels so
easy, and reconfirmed after an after midnight text following a three
hour conversation telling me I am the perfect girl for him. I fell
quick, I fell hard. I wonder whether I am destined to keep falling in
love this way – through words alone?

A couple of months ago I wrote about
wondering whether a year will go by with a day where I wouldn't think
of him. The answer is no. There hasn't been one day in these 12
months that I haven't felt something for him. Sadness, frustration,
and hope. But mostly love.

Just after I wrote that piece, we
became in contact more than we've ever been. It has been one of the
good things to come out of a very bad situation. Long emails and
texts almost each day, and one call. The contact is, to an extent,
more positive. I'm comfortable talking about things with him that I'd
never with somebody else.

I feel a different kind of love for him
now. It is more realistic due to the difference and distance between
us. I feel it's evolved from idealism and me wanting to be in a
relationship, to lustful, to heartbroken... and now it's this type of
caring, understanding, non judgmental, fully trusting love on my
part. It's the kind of love I hope to feel growing old with someone.
Only I won't with him. It's a nostalgic love. I feel more sad than
happy about it, especially when he told me he wishes he could have
our time again.

I don't expect love from him in return.
Though in the past I've hoped for it, I've never expected it. Just
loving him is enough for me. Is that unhealthy? To settle for
unrequited love?

This thing. It's based on words and
memories alone. And need. Mutual need. Unconventional love. I sort of
want to set him free from my heart. He deserves this love from
somebody closer to him, and so do I. And then I get sad at the
thought of him no longer needing me.

A month ago I went to see a counsellor.
The counsellor asked whether I loved him.

I said yes.

The counsellor asked whether I told him
that I loved him.

Only once in person. A few times
recently in text, to remind him of his worth to me. But I don't want
to push it. I don't want to ruin things. Maybe he knows my love for
him through my loyalty.

I have every right to tell him I love
him, the counsellor told me, for I have earned my stripes.

14 August 2011

It's been a lazy weekend. I am resting before I return to work tomorrow. Any more rest and I'd be asleep. Hold on, I have been asleep for a good portion of this past week.

Here are some blogs of note that have been written while I've been sleeping. This is a bit of a community service edition of blogs of note. There are some really important messages in the blogs I've noted. I really encourage you to visit them.

My Dad has become a blogger! Sort of. He is now a contributor to Think Tasmania - a website dedicated to Tasmanian life and tourism.

My parents are regular visitors to Tasmania and will retire there. Dad has plenty of stories of their travel and food to write about - he is a very gifted writer. It has been great to read about my parents' holiday adventures.

Something has been going on in my life recently that I can't find words to write about. It's not my story to tell. It's heartbreaking, worrying, and has taught me what despair and unconditional love means. I know how important it is to speak and listen to someone in need.

Naomi from Under the Yardarm has written a piece so beautiful that I had to share.

"I told him that so many men kill themselves because they think it’s not
alright to admit they are not OK. That it can be so hard to admit you
are depressed. But that all you have to do is reach out to someone.
Family, friend, teacher, doctor. Speak."

If there is a piece I'd wish I'd written, it's this one. Thank you Naomi for writing what I've not been able to. I really urge you to read Speak and share it with those important to you.

This young man, James, is amazing! He was one of the young people I mentored at the Royal Children's Hospital (RCH) in Melbourne. James is an enthusiastic activist and he is fast becoming a very influential person in the chronic illness community. He has incredible perspective about his own illness too. I am incredibly proud of him.

There was a
presentation of awards and they farewelled me during it. One young
person made a little speech about the time I was concerned about his
broken foot on camp in January 2009.

He was walking down
the corridor, looking worn out and red. I asked him if he was ok and
added 'you're a bit red'.

'Hypocrite!', he exclaimed!

Funniest. Moment.
Ever. We laughed and laughed at that moment, and continue to today.

I paid him back this
camp: he and I went to the kitchen to get milk for supper. As he
reached in the fridge to get the milk, I put on his Woody from Toy Story
mask, and when he turned around, he jumped so much! Very funny!

That was James. :) James represents why I love helping people through my participation in
the disability and chronic illness community. Not only can I impart my
experiences, but I learn so much too.

"[Daniel] was wearing a red t-shirt the day he was last seen waiting for a bus
under the over-pass of a very busy road. Heading to our region’s major
shopping centre to buy Christmas presents. The red t-shirt has become
the Daniel Morcombe Foundation’s symbol."

10 August 2011

I am out of hospital now, resting at home until next Monday. I am feeling much better, after feeling so sore and tired for more than two weeks.

Thank you so much for the lovely wishes you left in the comments section, on Twitter and Facebook. Plus texts and visitors kept coming. I feel very loved. Thank you. Your support is so appreciated. Also thanks to Sydney Shop Girl for keeping you updated.

The rest I expected to get in hospital didn't really happen - time is marked by observations or medication or procedures. Blood pressure (mine is low). Tablets. Dressings (I negotiated mine down from four times a day to twice). And then there's teaching the nurses about ichthyosis and the treatment. I just wanted to sleep. So now I am at home I am just lazing about. It is nice to have been detached from the world for a short time - from the stuff happening in my own life to the serious tragedies worldwide.

I felt a bit of a fraud in hospital. I often do. Of course I had legitimate reason to be there, but I saw so many sicker people than me: people that needed the nurses more than me, people that weren't able to smile about their predicament. My care was fairly self managed - but it helped to have meals prepared and wet dressings and enforced semi-rest.

I got some new perspective in there. Not like the perspective by Katy
Perry: 'I put on my catsuit and I got a crystal stuck under the bed of
my finger. It's not fun' (as I read in Rolling Stone magazine in bed). Oh dear. I got the perspective of relative sickness, and the desire to make plans. I thought... overall I am pretty well, considering. And I am not usually spontaneous. And while I am well and young and only tied down by rent, I thought it's time to save for more than just clothes. And I was inspired by Eden and Mrs Woog flying the Aussie flag.

I heard Empire State of Mind on the radio this morning, sprung out of bed and shouted, to no one but myself, 'I AM GOING TO
NEW YORK!'. And then my eyes watered a little - I cried happiness at the thought! I banked my cheque from New Idea today, knowing it would help fund my trip. I called my managers to give them a health update and told them I'd be going to America this time next year.

And I thought about Carrie in Sex and the City and how, for a week, I may be just like her. Then I decided I'd rather be like my other NY heroine - Felicity Porter - wide eyed and frizzy haired, always loving the bad boys.

05 August 2011

"You can get addicted to a certain kind of sadness" ~ Somebody that I used to know, Gotye feat Kimbra

When I did my Hack interview a couple of weeks ago, I told journalist Alex Mann that I prepared myself for talking about love by listening to the saddest love songs I had on my iPod that morning. Songs by Angus and Julia Stone mostly. Alex said it's funny how when we think of love we don't immediately go for the happiest love songs.

Despite how sad the lyrics are, they can lift me up. Listening to sad
love songs is a form of empathy. It's reassuring to know that someone as
popular, talented and good looking as my musical idols have experienced
some of the heartbreak and longing I have. And there's also the
fleeting moment of me thinking 'he's single, I'm single, we've both been
hurt by love, we can be soulmates...' Um. No.

We discussed how it's like the lyrics of sad songs were written to fit our exact situations. Like this one:

"Here I go.
I'd tell you,
but you already know.

If you love me, with all of your heart.
If you love me, I would make you a star in my universe.
you'll never have to go to work.
you'll spend everyday, shining your light my way." ~ For You, Angus and Julia Stone

Or this one:

"How many days am I gonna regret you?
How many nights till I forget you?
Have I been wasting all those years
Held down by these tears
How many dreams have I left deserted?
How many hopes have been diverted?
Have I been buried in the dirt
Held down by this hurt
And how many lows did I let you highjack
How many ways can I study the playback
How did I end up lying here
Crying underneath a Dublin sky?" ~ Dublin Sky, Darren Hayes

Alex and I also talked about what my ideal romance would be like. Dates at concerts and laughing and cuddles and happiness I guess. I told him that I often idealise the thought of love, rather than the relationship itself. That I tend to create this illusion of what he might really be like in my mind, and in reality, he's not. And I said I am a bit like the Seeker Lover Keeper song:

"I love you
more when I’m missing you...
I think I was born to be
in a state of longing
Born to be wanting wanting
I put in a
letter for you
I love the danger in distance..." ~ Even though I'm a Woman, Seeker Lover Keeper

I quite like missing someone. And I thought I was the only one. But I stand in good company with singer-songwriters Blasko, Seltmann and Throsby with being content with yearning.

This week I discovered the beautiful song, Somebody that I Used to Know by Gotye feat Kimbra. Gotye is the music I've been missing. I don't know how it escaped my radar, but hearing Somebody that I Used to Know reminded me of Gotye's 2006 gem Heart's A Mess. Its dramatic moans, eery bleeps and bleeding lyrics mirrored my heart
back then. I'd play it on repeat, pining for my (yet again) unrequited love, never making a move. I'd drive home from his house in the dark hours, analysing every move that nearly happened, singing my lungs out. I am never as dramatic as when I am yearning for a boy.

Somebody that I Used to Know has similar sentiments. It'd be good to play after a breakup. Perhaps this is the quiet man's You Oughta Know? A few lyrics resonate with me, not that I am in that broken up place now, but my heart does ache, and I am both yearning to be loved and for everything to be ok (heavily weighted to the latter).

"Now and then I think of when we were
together
Like when you said you felt so happy you could die
Told myself that you were right for me
But felt so lonely in your company
But that was love and it's an ache I still remember

You can get addicted to a certain kind of sadness
Like resignation to the end
Always the end
So when we found that we could not make sense
Well you said that we would still be friends
But I'll admit that I was glad that it was over

But you didn't have to cut me off
Make out like it never happened
And that we were nothing
And I don't even need your love
But you treat me like a stranger
And that feels so rough
No you didn't have to stoop so low
Have your friends collect your records
And then change your number
I guess that I don't need that though
Now you're just somebody that I used to know
Now you're just somebody that I used to know
Now you're just somebody that I used to know

Now and then I think of all the times you screwed me over
But had me believing it was always something that I'd done
But I don't wanna live that way
Reading into every word you say
You said that you could let it go
And I wouldn't catch you hung up on somebody that you used to know

But you didn't have to cut me off
Make out like it never happened
And that we were nothing
And I don't even need your love
But you treat me like a stranger
And that feels so rough
No you didn't have to stoop so low
Have your friends collect your records
And then change your number
I guess that I don't need that though
Now you're just somebody that I used to know

(Somebody)
I used to know
(Somebody)
Somebody that I used to know
(Somebody)
I used to know
(Somebody)
Now you're just somebody that I used to know
I used to know
That I used to know
I used to know
Somebody"

01 August 2011

I am really sore. It will pass. But still, I am really sore. It hurts to dress, it hurts to walk, it hurts to lie down. It hurts.

I went to get a medical certificate and antibiotics today. I went to buy a birthday card on the way. The sales assistant asked me why I look the way I do. She asked about whether I can sunbake. Fuck no! Even if I was well enough to get adequate sun exposure, I would never sunbake. I was there to buy a card, not to discuss dermatology. I told her that I don't want to talk about why I look this way today. I rarely do.

My pain is most likely down to over-commitment. Long hours. Socialising. Conferences. My skin is not the only thing in pain. My heart aches. I can't write about it here. Or even find the words to write about it for myself.

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Copyright + disclaimer

The material on Tune into Radio Carly is copyright.The writing in this blog is by Carly Findlay unless otherwise stated.Most photos in this blog are by Carly Findlay unless otherwise stated.Please do not reproduce without permission from Carly Findlay.

This blog represents my personal opinions and experiences. It does not reflect those of my employers'.The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.